Aging Alone: The Challenges Faced by Older Americans with Cognitive Impairment
Introduction
According to a study published in JAMA Open Network on August 18, 2023, an estimated 1 in 4 older Americans with dementia or mild cognitive impairment live alone and are at risk of various challenges such as unsafe driving, wandering outside of their homes, mixing medications, and missing medical appointments. These individuals are particularly vulnerable due to the lack of support and infrastructure within the United States healthcare system. As the population ages, it is imperative to address the unique needs of this growing demographic.
The Social Determinant of Health
Living alone for individuals with cognitive impairment is a social determinant of health with impacts that can be as profound as poverty, racism, and low education. Elena Portacolone, PhD, MBA, MPH, from the Institute for Aging and Health at UCSF and the Philip R. Lee Institute for Health Policy Studies, emphasizes the significance of recognizing the challenges faced by these individuals and the need for a comprehensive care system.
Inadequate Support
In a qualitative study conducted by UC San Francisco-led researchers, 76 healthcare providers including doctors, nurses, social workers, and home health aides were interviewed. These providers expressed concerns about patients missing medical appointments, not responding to follow-up calls, and forgetting the purpose of their appointments. The lack of healthcare staff to reach out to these individuals exacerbates their vulnerability.
Furthermore, some patients were unable to provide important information about their condition, leaving healthcare providers uncertain about their rate of decline. The absence of emergency contacts increases the risk of inadequate response during medical emergencies. These challenges highlight the need for a more robust and coordinated healthcare system to cater to the specific needs of individuals living alone with cognitive impairment.
Untreated Medical Conditions and Neglect
Healthcare providers identified untreated medical conditions, self-abandonment, malnutrition, and falls as common risks faced by individuals living alone with cognitive impairment. The limited availability of in-home services and the inadequacy of Adult Protective Services contribute to these risks, potentially resulting in serious consequences for these vulnerable individuals – consequences that could have been prevented with proper support.
The Consequence of Shaky Infrastructure
A concerning consequence of the currently inadequate infrastructure supporting individuals with cognitive impairment is that they often go unnoticed until they experience a crisis, such as a fall or a medication mismanagement reaction, which leads to hospitalization. In some cases, patients are discharged from the hospital without a support system in place, leaving them vulnerable and exacerbating their healthcare needs.
These findings highlight a significant indictment of the US healthcare system. Currently, subsidized home care aides are only available to the lowest-income patients, leaving a large portion of individuals with cognitive impairment without the necessary support. Elena Portacolone emphasizes that approximately 79% of people with cognitive impairment in the United States have an income that excludes them from Medicaid-subsidized home care aides. Moreover, the criteria for eligibility for subsidized aides are often limited to acute episodes, providing inadequate long-term care solutions.
Abundant Support in Other Countries
In contrast to the situation in the United States, many European countries, Japan, and Canada have robust systems that provide subsidized home care aides for a higher percentage of their population living with cognitive impairment. A study conducted by Portacolone in 2021 highlights the stark differences in support systems between different countries, further emphasizing the shortfalls of the US healthcare system.
A Call for Change
The researchers argue for a system in which comprehensive supports are made available through expanded funding from Medicare and Medicaid. This becomes increasingly critical as effective treatments for reversing cognitive decline are not yet available, the number of older adults living alone continues to rise, and traditional support systems such as family structures are becoming less reliable.
Expanding Perspectives
When exploring the challenges faced by older Americans with cognitive impairment living alone, it is essential to consider related concepts, practical examples, and anecdotes to provide a more comprehensive understanding of the topic. Let’s take a closer look at some of the unique insights and perspectives:
The Psychological Impact
Living alone with cognitive impairment can have profound psychological effects on individuals. The loneliness and isolation experienced by these individuals may worsen their cognitive decline and overall well-being. Research has shown that social interaction and engagement are crucial for maintaining cognitive function and mental health. The lack of social support further highlights the urgent need for comprehensive and accessible care.
The Economic Burden
Cognitive impairment poses not only significant challenges to individuals and their families but also carries a substantial economic burden. The costs associated with caring for individuals with cognitive impairment, including medical expenses and specialized caregiving, can be overwhelming. Without adequate support from the healthcare system, many families are left struggling to manage the financial strain of providing proper care for their loved ones.
Cultural Perspectives
Understanding the cultural perspectives surrounding cognitive impairment and living alone can shed further light on the challenges faced by these individuals. In some cultures, taking care of older family members is considered a traditional obligation. However, changing societal dynamics and increasing rates of migration often disrupt traditional support systems, leaving older adults with cognitive impairment more vulnerable.
Innovative Approaches
Exploring innovative approaches and technologies to support individuals living alone with cognitive impairment is crucial. Advances in telemedicine, assistive technologies, and remote monitoring systems can help bridge the gap and provide remote support to these vulnerable individuals. By leveraging technology, healthcare providers can monitor patients’ medication adherence, provide virtual check-ins, and detect any potential emergencies.
Conclusion
The challenges faced by older Americans living alone with cognitive impairment are significant and urgent. The current healthcare system is ill-equipped to provide the necessary support and infrastructure to cater to their unique needs. As the population ages and the number of individuals with cognitive impairment continues to rise, it is essential to address these challenges and advocate for comprehensive reforms in healthcare policies and funding. By providing better support and access to care, we can improve the quality of life for these individuals and ensure their well-being in their later years.
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An estimated 1 in 4 older Americans with dementia or mild cognitive impairment lives alone and is at risk for practices such as unsafe driving, wandering outside the home, mixing medications, and missing medical appointments.
In a study published in JAMA Open Network On August 18, 2023, UC San Francisco-led researchers concluded that the United States healthcare system is ill-equipped to care for patients living alone with cognitive impairment, a group whose numbers are projected to increase as the the population ages.
For these patients, living alone is a social determinant of health with an impact as profound as poverty, racism and low education, said first author Elena Portacolone, PhD, MBA, MPH, of the Institute for Aging and Health at the UCSF and the Philip R. Lee Institute for Health Policy Studies.
In this qualitative study, the researchers interviewed 76 health care providers, including doctors, nurses, social workers, social workers, home health aides, and others. Participants worked in memory clinics, home care and social services and other locations in California, Michigan and Texas.
Providers expressed concern about patients missing medical appointments, not responding to follow-up phone calls from the doctor’s office, and forgetting why appointments were scheduled, leaving them vulnerable to slipping under the radar. “We don’t necessarily have the staff to really try to reach them,” one doctor said in an interview.
Discharging a patient is like “sending a child to play on the freeway”
Some patients were unable to help their doctor with missing information in their chart, leaving providers unsure about their patient’s rate of decline. Many did not have names listed as emergency contacts, “not a family member, not even a friend to confide in in case of a crisis,” according to a case manager.
These patients were at risk of untreated medical conditions, self-abandonment, malnutrition and falls, according to the providers. An in-home services coordinator also noted that calls to Adult Protective Services were sometimes dropped until the patient’s condition became very serious.
One consequence of the shaky infrastructure supporting these patients was that they were not identified until they were sent to a hospital after a crisis, such as a fall or a reaction to medication mismanagement. Some were discharged without a support system in place. In one case, a patient was sent home with a taxi voucher, a situation one psychiatrist likened to “sending a child to play on the freeway.”
These findings are an indictment of our health care system, which fails to provide subsidized home care aides for all but the lowest-income patients, Portacolone said.
“In the United States, approximately 79% of people with cognitive impairment have an income that is not low enough to make them eligible for Medicaid-subsidized home care aides in long-term care,” he said, and He added that the threshold for a person living alone in California is $20,121 per year.
While Medicare is available to adults age 65 and older, subsidized aides are typically only provided after acute episodes, such as hospitalizations, for set hours and for limited periods, he said.
“Most patients must pay out of pocket, and since cognitive decline can last for decades, it is unsustainable for most people. The aides that are available through Medicaid are very poorly paid and typically receive limited training in caring for older adults with cognitive impairment,” she added.
Abundant subsidized home care aides in Europe, Japan and Canada
By contrast, subsidized home care aides are generally available to a significantly higher percentage of their counterparts living in parts of Europe, Japan and Canada, Portacolone said, citing a 2021 review of 13 countries, of which she was the main author.
The study findings illustrate substantial deficiencies in the way our health system cares for people with dementia, said lead author Kenneth E. Covinsky, MD, MPH, of the UCSF Division of Geriatrics. “In an era where Medicare is spending millions of dollars on newly approved drugs with very marginal benefits, we must remember that Medicare and other payers refuse to pay much less money to provide needed supports to vulnerable people with dementia.”
The researchers advocate for a system in which robust supports are made available through funding from expanded Medicare and Medicaid. This will become increasingly critical, Portacolone said, “because effective treatments to reverse the course of cognitive decline are not available, childlessness and divorce are common, and older adults are projected to live longer and, at often alone.”
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